- we had the same experience

[Guest guest]

, I am guessing the factor that postponed your daughter's diagnosis was

the same one we had - her birth weight and height were above-average for an RSS

child. HOWEVER, clearly she was significantly smaller than her sibling!!!!

Problem is that doctors somehow often forget that part - the fact that parental

genetics play a part!

Our 5-year-old was born full-term at 5lbs 2 oz and 17 inches long (on

the higher end for RSS). Except for some major blips, she has always tended to

stay around the 10%'tile in height - and so it wasn't until she stopped growing

(caloric deficiency) at 2 years that she was diagnosed. But my husband is 6'4 "

& I am 5'4 " , so WITHOUT RSS would have been 5'8 " or so, so as a child,

she should have been tracking around the 80%'tile.

Dr. H always emphathizes this to parents - that the key is looking at how many

standard deviations BELOW what your child SHOULD have been at without RSS are

they actually tracking!!! Not just how they are comparing to other RSS kids.

But yet, when I first read your daughter was 6.10 and 19 " at birth, I went WHOA

but then read that your other child was 9.5lbs!!! Big difference!

I hope you get some answers from others about learning disabilities.

Good luck!

RSS-Support wrote:

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Hi, my name is and my daughter has RSS.  She is 7 1/2

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yrs. old and in the first grade.

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I am new to your list and am very excited, I joined the Magic

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Foundation a year ago when she was diagnosed, but just discovered

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your support group.

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I hope you don't mind if this 1st message is long, but it is an

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opportunity for me to summarize my story and thus help you give me

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advice! (and vice versa)

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My OB was concerned that was not growing when I was pregnant,

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although ultrasounds were done at intervals and brain growth measured

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and no abnormalities found.  When my due date came though, my OB

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didn't want to wait around and we induced.  was 6# 10 oz. and

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19 1/2 " long. (My first child was 9# 5oz.) Everything seemed normal

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for the first 4 days.  I'll skip the detail, but she has low muscle

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tone, had reflux as an infant, has very little appetite, had tubes in

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her ears at 7 months, her weight has been below the % chart forever,

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her height around 25%.  She saw an eye doctor as an infant and all

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was okay, but we discovered she was far sighted after her 6th

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birthday.  The Ped. Opthamologist said she has several RSS patients

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and that although the far sightedness is not a primary symptom of

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RSS, it is common.

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I have a lot of frustration and anger that was diagnosed so

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late, age 6 1/2, even though we were going to Riley Hospital for

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Children from the age of 8 months approx.  I was fed up when the

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Riley " experts " labeled as " LD " at age 5 and told me they

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imagined that she would be in " LD " classes for the rest of her life! 

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Why did this take so long when I knew had understanding and

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processing problems from age 2 or so, and told them for years.  Why

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didn't they tell me that she might qualify for special programs thru

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the school, that the school did their own testing of kids and it

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would be worth a try to have her tested by the school?  Now I know

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she could have qualified and benefited from school programs from age

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3 on, but then I didn't.

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Also, they led us to believe that they tested her for everything

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and could find no diagnosis.  But they did not get her to see a

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geneticist.  I didn't know this until after the LD label at age 5. We

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got her in the school provided special ed (as I call it) program

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(only 6 months before she started kindergarten).  After we jumped

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that hurdle I called my ped., asked to be referred to new docs

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outside of Riley so we could find out if there was anything we

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missed, didn't test for, etc.

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We went to a new Ped. Neurologist who then referred us to a

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geneticist, Dr. Escobar.  He diagnosed her almost as soon as he saw

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her.  He was actually at Riley all those years before and we were not

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sent to him, nor him to us!

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It has been difficult but a relief to have a diagnosis, it really is

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the only thing that makes sense, given her otherwise unrelated

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symptoms.  's low muscle tone, low appetite, low weight and

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general small size have been the main symptoms.  Our biggest concerns

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are her appetite and learning disabilities.  Do any of you or your

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children have LD's and what has been your experience?  Do any of you

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parents have RSS kids that are just below average rather than below

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the charts in height? (My husband & I, and my entire family, are tall

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and we wonder if that's a factor?)

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Thanks for your time, I won't be so long winded again!  By the way,

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is also about the sweetest most loving little girl in the

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world, too!  :-)

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, mom to Trevor, 10 no RSS; , 7 RSS; Tori, 4 mos no RSS

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